Skip to main content

Porphyria Post



DR BRUCE WANG SELECTED AS WINNER OF “BEST PRESENTATION” AT ICPP
Dr. Bruce Wang, Porphyria Expert at UCSF and American Porphyria Foundation Protect the Future physician, has won Best Presentation at ICPP for his excellent work titled “Single Cell Transcriptomic Analysis of Hepatocytes in a Mouse Model of Porphyria Cutanea Tarda” in collaboration with B. Patkar, D. Burhan, and J. Phillips.  118 abstracts from 27 countries were submitted for presentations and posters.  Congratulations Dr. Wang!

INTERNATIONAL CONGRESS OF PORPHYRINS AND PORPHYRIAS (ICPP)
With over 500 attendees from 59 countries, the ICPP meeting held in Milan, Italy, September 8-11, was a global success. The congress began with a Patient Day, where patient advocacy groups collaborated on our work and participated in lectures. The scientific program was three days of presentations from scientists, researchers and clinicians. The APF will share detailed information and key learnings from the Congress over the next several weeks.

GLOBAL PORPHYRIA ADVOCACY COALITION FORMALIZED
GPAC has been formalized. The APF is proud to be a founding member of the Global Porphyria Advocacy Coalition, an umbrella organization for porphyria patient advocacy groups worldwide.  Work will focus on access to treatment, support, research, awareness and education of all the porphyrias.  We are stronger together!


Comments

Popular posts from this blog

GLOBAL PORPHYRIA ALLIANCE

GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: Porfyriforeningen.dk (Porphyria Association Denmark)Denmark: Porfyrier.dk (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…

WHAT IS NEUROPATHIC PAIN?

What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…

Happy Winter Season!

                  Happy Winter Season!